Scared of bulbar symptoms

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Jenliv27

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Hi there.
1st post here.
For the past 8 weeks I have been noticing difficulties with my speech. I seem to say a word wrong about 5 times each day.
lealther instead of leather
Ladagne instead of lasagne
Brame instead of blame
Blin instead of bin.
I have also been suffering from twitching for the same amount of time mostly all over.
I feel like I have a lot more saliva the past months or so like I am constantly swallowing.

My husband said he has noticed the odd slurred word but as I suffer from anxiety he thinks it’s down to that and me reading so much about ALS.
I have been refered to nuerolgy. Petrified this is bulbar onset as I have read peoples 1st symptoms are slurred words.
 

lgelb

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Very doubtful this is ALS. Widespread twitching, for one, is a strong argument against, likewise increased saliva (at onset). Presuming neurology doesn't sound any alarms, you might get checked for salivary gland stones and things of that nature. Anxiety, dry mouth (which can ironically lead to uneven saliva production), chapped lips/tongue, allergies, poor sleep and/or GERD are all much higher probability issues. If your anxiety has not been adequately addressed, there are many online counseling resources these days.

Best,
Laurie
 
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Jenliv27

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Thank you so much for the reply. It’s more the speech problems that are worrying me. I just wondered if bulbar would the speech be worse by now? I have heard others say you would sound drunk but some others say it would start with speech problems such as a single slurred word.
 

lgelb

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That's where chapped lips and dry mouth come in. There are days my lips are so dry they are swollen. And I'm in a humid climate. It is not at uncommon to stumble over words. I would not worry about 5 a day. When you are worried about them, you tend to have more/similar ones.

Why were you reading about ALS before now?
 

Jenliv27

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It started off with aching arms. They were getting very tired from doing the simplest of things like dishes, hanging up washing etc.

Then I googled it and somehow found Als, since then I developed the speech issues and it’s really scaring me, seems to be happening every single day and now I am scared when I do speak that it’s going to happen again and again, which it then does.

I have suffered bad health anxiety for years. The doctor didn’t want to refer me to nuerolgy as they think this is caused by anxiety and the worry that I have MND. They eventually refered me but again they said they can’t find any neurological defect with me. This is because they haven’t heard the slurring as it only happens around 5 - 6 times per day.

When I say slurring it’s more saying the wrong letter in a word.

Yesterday is was:

Somedimes instead of sometimes

Ome instead of one

Igher instead of higher

I have asked other people if the notice a difference in my speech and they have all said no. My husband said he noticed that is happend twice but again he thinks it’s because I worry over it.

It’s has been 8 weeks now. I have also noticed I seem to be sleeping with my mouth open which I didn’t do before. Also I have noticed a gargling sound in my throat after drinking liquids sometimes. When I tense my legs I get cramp and also feel like there is muscle loss there. I also have a scalloped tongue.

I have totally convinced myself this is bulbar onset and it’s taking over my life. To the point I can’t function and I cry everyday.
 
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Bestfriends14

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I'm sorry that you're crying every day for a disease you have not one symptom of having. This is time you are spending that you will never get back. I'm not saying that your issues are anxiety related, but in comparing your symptoms to the other thousands of "could I have ALS" posters who suffer from healthy anxiety, your symptoms align with theirs more than anyone who has ALS.

Go live your life. Life is finite and it is up to each and every one of us how we choose to live that life. The choice is yours.

Good luck to you
 

Clearwater AL

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I’m going to put this here… maybe the Mods may move it.

I read the “Could this be ALS” sub-forum. So many are
health anxiety, admitted anxiety, going to counseling over it.
There is a link between Health Anxiety and Depression.
They persist on posting after very ALS knowledgeable
members have clearly told them (you) you don’t have ALS.

There’s a few, who almost everyday, after they have previously
been told they don’t have ALS continue to search countless
Threads some going as far back to 2008! I’ve followed them.

Ok, it’s ok to search, day after day, maybe finding something
to reinforce their suspicion they (you) really have ALS.

Here’s a suggestion… after you have searched and searched
give your anxiety/suspicion a brain break. Give your heart
a little break… maybe a smile before you sign off

At the bottom of this Forum is a sub-forum titled "Off Topic”.
There are two… “Comedy Humor and Jokes” and “After 5
Forum Pub”.

A member FrankB, posts some really funny stuff, good stuff
and others. As much as I have going and with my wife I try to
devote time to humor, You Tube of comedian skits.
Sometimes during the day I’ll think of one I recently watched
and I’ll smile.

Again, the “After 5 Forum Pub” has some good stuff too.
It may help change your thinking for at least a while.

Check ‘em out before you sign off.
 

lgelb

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If you can't function, please get better help, even on line. Plenty of counselors are available, so if yours is not all that, it's time to move on. You deserve a healthy, happy life and this is not it.
 

Jenliv27

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Thank you very much for the reply it is very much appreciated.
The speech symptom is what’s worrying me most which I have read is an early sign of bulbar.

I will search elsewhere for help with anxiety.
 

lgelb

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5-6 mangled words a day is not how bulbar symptoms begin in ALS.

All the best.
 

Jenliv27

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I am sorry to bother anyone again.

I have had speech problems for 2 months now. It has happened around 6 times today and I feel like I am slurring a lot more.

Today’s were: Collesh instead of college

Pice instead of price

Random instead of Randal

Aside from these words mistakes sometimes I just slur. It seems to be later in the day is happens most.

If I had bulbar would it have progressed more by now and would I be sounding drunk all the time? This is happening to my speech everyday single day. There isn’t a day when it doesn’t happen and I am convinced it must be bulbar onset :(

Everytime I take a drink of any liquid my throat makes a gargling noise and my mouth always have lots of saliva which I can’t seem to clear.

I have arranged a private nuero app but due to covid it’s over the phone 😓 my nhs wait time will be months. I am going out of my mind with worry ad I have read that some people slurred occasionally for months at 1st.

I hope I have annoyed anyone by writing here.
 
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Nikki J

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A phone appointment should be fine since you are worried about speech issues. These can be assessed remotely I actually just did a remote visit for an ALS research study They would not have wasted their time if they felt they could not get good data. This was an initial visit so it wasn’t as if they had to have it right now to maintain follow up. She did a zoom call

it honestly sounds like you have worked yourself up The mind is very powerful. Let us know how your visit goes
 

lgelb

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If the neuro wait is longer than an ENT, try the ENT -- not because I think you have a real problem but evidently you need reassurance.
 

Jenliv27

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Thank you for the reply. Wouke ENT notice if there were any problems related to bulbar? My speech seems to be worse today.
 

lgelb

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An ENT is trained to notice if there is a real problem in those areas. If there is not, you don't need to worry about bulbar onset. If there is, s/he can help you determine what it is -- still most likely not ALS, as we've discussed.
 
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